About 7 months into IVIG now with stong recurring symptoms if I don't make the 3 week routine. Saw the neuro last week who prescribed me Mycophenolat, 2x2 500mg pills p/d. which eventually is supposed to replace the IVIG.
It had been almost five weeks since my last infusion and over the weekend I was hit pretty hard, being almost paralyzed for 2 days
(started the Myco on Thursday) and for the first time had some hefty headaches.
The IVIG took effect after a few days and the Myco seems to enhance the effect.
Read up on it of course and this medication is supposed to tell the
immune system to calm down and not reject a replaced organ after the operation.
Looks like they found a second purpose for this stuff.
Anybody else have experience with this med. and can you fill me in on your progress?
I had to stop IVIg, it made my Pulmonary Fibrosis worse. Then got put on Prednisone and blew up like a balloon. Prednisone started giving me some "steroid myopathy", so they are weaning me off that. I was sent for a Plasmapheresis, 5 plasma exchanges. About 1/2 way through that treatment they put me on CellCept ( Mycophenolat), a non-steroidal immuno-suppressant. Although I've only been on it a couple of weeks, I am feeling a little strength and stability in my legs. Can't say if it is the CellCept or the Plasmapheresis. I've had no noticeable side effects from the CellCept. My one concern is that CellCept has side effects when taken along with another immunosuppressant (Prednisone). Side effects are skin cancer and lymphoma.
Thank you Henk. I had an acquaintance that was on CellCept and developed many skin cancers before he passed.
Also, my son passed away last year from lymphoma (@ 43). He was a liver transplant patient and his meds included CellCeptt and another Immunosuppressant. It was probably the combination that did it, that’s why I’m hoping to get off the prednisone, soon.
For anyone reading this post, my upper legs were getting stronger, with no changes to my other symptoms. Around the 5th or 6th of December, I started to backslide. Now, about 5 weeks out, I am as bad as, if not worse, than before. I'm going back to my Neuro soon, and see what she thinks. Fatigue, loss of balance and and loss of strength are my biggest problems. I get pains in my hands, feet, arms, legs & chest. It is a sharp stabbing pain and doesn't last too long, so that is why I don't list it in my TOP symptoms. I'm still being weaned off the prednisone, cant wait for that to happen. I just got reduced to the 2.5 mg tablet. I take 1 - 20mg tablet one day, and 2.5 mg tab the next.
A few weeks into the CellCept, I felt really good, people told me how much better I looked (and I felt that way, too) Personally, I think the Plasmapheresis contributed greatly to my system, and the CellCept hasn't kicked in yet.
It's tough to be a CIDP patient, but I'm IMPATIENT and want to be better YESTERDAY! I too, am concerned about the skin cancer and/or lymphoma, but I'll just cover up when I go out and have my blood tested regularly. I'm fading, time for my afternoon nap! :-)
Take care and stay healthy, Henry
Henry said:
I had to stop IVIg, it made my Pulmonary Fibrosis worse. Then got put on Prednisone and blew up like a balloon. Prednisone started giving me some "steroid myopathy", so they are weaning me off that. I was sent for a Plasmapheresis, 5 plasma exchanges. About 1/2 way through that treatment they put me on CellCept ( Mycophenolat), a non-steroidal immuno-suppressant. Although I've only been on it a couple of weeks, I am feeling a little strength and stability in my legs. Can't say if it is the CellCept or the Plasmapheresis. I've had no noticeable side effects from the CellCept. My one concern is that CellCept has side effects when taken along with another immunosuppressant (Prednisone). Side effects are skin cancer and lymphoma.